Urinary tract infections (UTIs)

Anyone with a long-term indwelling urinary catheter is at risk of developing a urinary tract infection (UTI). Using a catheter can introduce bacteria into the bladder and cause a UTI. The longer the catheter stays in the bladder, the greater this risk so that, after 30 days, bacteria will inevitably be present in the urine. Bacteria may or may not cause symptoms, but bacteria multiply quickly in the urine and the constant friction of an indwelling catheter on the lining of the bladder ulcerates its surface, enabling the bacteria to invade the bladder wall and blood stream. From the bladder, infection can spread up the tubes or ureters to the kidneys.

The bladder lining is quite remarkable. It's coated with mucin which acts as a non-adhesive surface for bacteria. If that mucin surface is breached, bacteria can attach to the surface cells that line the bladder. These are called umbrella cells and have receptors and, if stimulated by bacterial adhesion, this triggers a remarkable antibacterial response. Cells and molecular reaction eliminate the bacteria so we have an organ which can defend itself from infection.

From that point of view, we need to be developing a urine collection system which maintains the anti-bacterial mechanisms of the bladder. Unfortunately, the indwelling catheter that is used, which was designed way back in the 1930s, does damage those anti-bacterial properties.

The catheter is held in the bladder by a balloon, which is filled with sterile water, and this prevents the bladder from emptying completely so that you always have some residual urine in the bladder, and that will be infected by bacteria.

Secondly, the catheter has a protuberant tip and this can damage that surface lining in the bladder and the eye holes are in the tip of the catheter, not at the base of the bladder. So we have here a problem which does mean that the catheter is associated with a very high incidence of healthcare infections. In fact it accounts for more healthcare infections worldwide than any other medical device.

Most catheter-associated urinary tract infections (CAUTI) are caused by bacteria but treatment with antibiotics needs to be prescribed with caution. While some people find a low maintenance dose of an antibiotic helpful in controlling recurrent infections, bacteria can become resistant to antibiotics and their elimination can lead to an overgrowth by fungi such as Candida albicans. Catheter users are encouraged to drink 3 litres of fluid every day to try and reduce the risk of infections. CAUTI are one of the most common causes of infections in hospitals. Because of this risk, catheterisation is recommended only as a last resort when other measures have failed.

Different kinds of urinary tract infection are:

Urethritis – when the infection affects only the urethra

Cystitis – when it affects the bladder

Pyelonephritis – which involves the kidneys and is relatively rare

Some of the people we interviewed had had very few or no UTIs since having a catheter. Peter Z felt he’d been lucky to have had hardly any since having a catheter fitted over 25 years ago. Peter Y, who was paralysed after a spinal cord injury, said he had very good professional care for three years and no infections during that time. The problems started, though, when he could no longer afford to have private care. Gavin had had more infections in the early days of having a catheter but fewer as time went on.

John is a retired medical practitioner. He is married and has three children. Ethnic background/nationality: White British.

You say that, up until now, you don’t think you’ve ever had any bladder infections?

I haven’t had a moments problem. I’m not even sure now that I’ve got one. And I didn’t send a specimen off today, but it’s just a little smelly and it’s not that, it isn’t the sort of clear urine that looks as though you could swim in, you know. You wouldn’t want to shampoo your hair with it, it’s just a bit cloudy. And who knows, I’ve just increased my fluids and waited events. I’m perfectly well. I haven’t had a fever or anything. I’ve just been aware that it’s not like champagne anymore.

……Although the urine’s a little bit cloudy, my wife says she can’t smell it, but I think it’s a bit smelly. Because I’ve been alright in myself, I’ve tended just to drink more and see what happens.

If you wanted it tested, you just take a specimen down to the GP’s surgery would you?

Yes. I’ve got the pots here. In fact I thought we were going to do that this morning, and my wife said, “Oh I think it’s a bit better today. Let’s leave it.”……

So you’ve never had to take any antibiotics so far for your urinary problems?

None at all, no. Nothing at all. Well I did, I know in my Conveen time, I had a couple of times when I needed it. But it always responded very quickly to antibiotics.

Signs and symptoms of a urinary tract infection include:

Abnormal urine colour (cloudy urine)

Blood in the urine (haematuria)

Foul or strong urine odour

Frequent and strong urge to urinate, not relieved by passing urine

Only passing a small amount of urine despite the frequent urge to ‘go’

A painful, burning sensation around the bladder or in the urethra

Pressure, pain or spasms in the back or the lower part of the stomach

Leakage of urine around the catheter

Chills

Fatigue

Fever

Vomiting

Feeling tired, shaky and washed out

If an infection has spread to the kidneys, symptoms also include fever, pain in the back or side below the ribs, nausea and/or vomiting.

The people we spoke to had experienced various symptoms when they’d had a UTI, for example a raised temperature, feeling flu-ish, hot, sweaty, having smelly or cloudy urine, pain and bladder spasms.

Ian is married. He lives with his wife and full-time live-in carer. Ethnic background/nationality: White British.

As I say, drink a lot and what I’ve read, I’ve read quite a lot on cranberry juice seems to come up highly, so I drink cranberry juice and take some cranberry juice tablets as well. And yes, and then yes just know your body and know your symptoms ‘cos if you get a twist in the catheter and it’s not draining, you can feel that and that is a different feeling to when you have an infection set in, which is quite nasty. ‘Cos I usually get, on average, two or three infections a year that need antibiotics.

Right.

So, yes, just know your body and then be able to contact your doctor and talk to your doctor ‘cos sometimes I can get prescribed antibiotics without even seeing the doctor. It’s just that I know what’s going on.

What are the symptoms for you when you’ve got an infection?

It’s normally hot and sweaty and you can really feel your heart beating in your throat. And there’s sometimes a squeezing and a banging on the back of your neck when it’s…

So you know everything about it every time and ring the surgery?

Yeah.

So those antibiotics are for when you’ve got an infection?

Yeah.

Are there other medications every day that you also take?

No, not daily, no.

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55

Sex:

Female

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Melanie is a journalist. She is married and has one child. Ethnic background/nationality: White British.

I know I’ve got one [UTI] first of all by the smell of the urine. It starts to smell of rotting vegetables, a bit fishy. It’s that sort of sweet sickly, I know immediately I have a urinary infection.

I also, because I’m, because of the spinal injury, I get an increase in spasm and tightness and muscle tone. That’s also another, my legs go very stiff and rigid. That’s another direct symptom of a UTI. I don’t tend to get shivery and feverish so now I just have to accept and take some antibiotics.

Because a UTI can spread to the kidneys, antibiotics may be used to treat it. Some people had taken a urine sample to their local surgery for testing there or in a laboratory. Others said they had dip sticks at home, sometimes bought from the local chemist, so they could test themselves and then arrange to see their GP. Most of the time, antibiotics can be taken by mouth. It is important to take them all, even if a person feels better before finishing the course. Some people said that their GP had prescribed an antibiotic for them to keep at home in case they had a UTI when the surgery was closed. Some doctors prescribe a low dose antibiotic to take every day to keep bacteria from growing in the urinary tract.

I think that many people who have long term catheters do find that quite regularly they feel off colour for two or three days, they feel unwell. They may feel hot and sweaty. We call that a rigor when they shiver and they feel cold but they are shivering and that’s termed a rigor. And this is not an uncommon experience amongst some patients and this a reflection of the infection that maybe circulating in the blood stream.

Under those circumstances, they need treatment and they need it to be treated with antibiotics. But we do try to avoid antibiotics because whenever you give antibiotics there’s the risk of resistance, of the bacteria developing resistance to antibiotics. So we avoid them at all costs. Far better to keep drinking and try and wash out the bacteria from the bladder.

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51

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Female

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Alex is a disability consultant. She is married. Ethnic background/nationality: White British.

First nine months and no infections, then I started to get infections. So eventually my urologist put me on a prophylactic dose of antibiotics, low dose, and I’ve been on those for the last seven years, every day and it’s brilliant. Because when I have come off it, when he’s said to me ‘Oh let’s see what happens, how you’ll get on now without it,’ I get an infection. I get pain. As soon as I go on this prophylactic dose, it goes away and I am fine.

What’s the antibiotic called?

It’s called nitrofurantoin; I take 100 mg twice a day. Now something very interesting that I discovered from another consultant was, because when I first got these infections my urologist put me on various different antibiotics at levels of 500 milligrams a day and I got bowel incontinence, which was awful, because I really couldn’t go out of the house. And I thought, “Oh my God”, you know, “What’s going to happen, why is this happening to me?” And I thought I’ll never be able to take antibiotics blah blah blah.

Anyway I went to a completely different consultant about food allergies, something very different, and I just happened to say to him that I was having this bowel incontinence. He asked about my antibiotics, and he said it’s totally dose specific because I was taking nitofurantoin but at a higher dose and that was giving me bowel incontinence. But as soon as I switched to the lower dose of nitrofurantoin, fine, no problems.

That’s good and no other side effects?

Well not that I’ve noticed at all.

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52

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Female

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Sharon is a housewife. She is married and she has two grown up children. Nationality/ethnic background: White British.

You said you get a lot of infections. How often were you getting urine infections?

I can get one a month, or I can go a couple of months. Probably the longest I’ve ever gone, probably be about three months without any problems.

And what are your symptoms when you have a urine infection?

Having to go to the toilet more frequently, pain, some days I can’t even walk with the pain.

Really?

Mm, this is why I packed up work in the end because I just wasn’t reliable. Yes very, I don’t know if it was the infection that’s causing the pain or when you’ve got an infection its starts off the bladder spasms, I don’t know.

So if you suddenly develop an infection do you go down to your GP or do you have some antibiotics available to start taking straight away?

No, I usually take a sample down and they test it. They’re really good. Take it down and the receptionist, I think they all know me down there by now. And then they send, usually the nurse will dip it and it’s usually showing, like everything. A lot of the time, obviously they send it off and usually get the results back the next day. And a lot of times it does come back negative but the GP usually does give me an antibiotic and it always seems to clear it up. Which is strange when it’s coming back, you know, with nothing in it.

Yes, and have they explained why that might be?

No.

If the UTI is more severe, the antibiotic is infused or injected into the bloodstream in hospital through an intravenous line, or IV. When Badg had repeated infections, he went into hospital. Antibiotics didn’t seem to be helping so he also had urodynamics and a cystoscopy. Urodynamics assesses how the bladder and urethra are doing their job of storing and releasing urine. A cystoscopy is where a doctor looks into the bladder with a special telescope called a cystoscope. It may be done to try and find the cause of symptoms such as frequent urinary tract infections, blood in the urine, or persistent pain when passing urine.

Charles was a computer engineer before he retired. He is married. Ethnic background/nationality: White British.

Do you find that that particular antibiotic suits you best?

Well, that’s the first one, trimethoprim, right. And that’s the one he [GP] allows me to keep at home. However increasingly, certainly within the last eighteen months, trimethoprim has become not the antibiotic which is suitable for some of the infections. I start, normally if I feel like I’ve got a UTI, I take trimethoprim, provide a urine sample as soon as possible, they send it away. It gets tested, and it comes back and says, “Well, you need to take this antibiotic.”

On a lot of occasions, probably 50 per cent of the occasions they, in the last year the tests have come back and said, “You need to take something else.” And specifically I’ve been told to take nitrofurantoin.

Unfortunately this, in the middle of 2011, I got an infection after a catheter change. Very important. It wasn’t a particularly successful catheter change and also my catheter type had been changed. And the catheter type which I currently had and I had before that change was, the pipe didn’t kink very easily. Whereas this catheter change or this particular catheter seemed to have a wider bore in it, so the urine flowed quicker, but would tend to kink. So you needed to be very careful.

So, anyway, it was obvious that there was something wrong because I seemed to get a recurrent infection after that catheter change. And I actually took nitrofurantoin over a period of probably three, four weeks and at that point I think I’d got sensitised to it. And then one Friday night I was hospitalised because I had breathing difficulties, which is a side effect of that particular drug.

Anyway I was put back in the hospital and then put on to flucloxacillin, I think that’s what it’s called, and that’s a sledgehammer, you know. And of course that has side effects.

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58

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Male

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Badg is a married IT consultant. He is self-employed and has two children. Ethnic background / nationality: White British.

UTI’s, I’ve only ever had one really bad one that made me weak and shivery and ill. Normally I’ve just got it, I’ve known I had a UTI. I used to try drinking it into submission. But recently I’ve given up on that. It doesn’t work and some of the nurses have actually admitted that the general perception is that you might as well not bother, it doesn’t work.

Over the last three years until the middle of last year I think, I had a problem with getting a UTI who’s only effect was to make you smell really bad, made the urine smell really bad. And I tried drinking that into submission. I tried taking antibiotics. My doctor leaves me with Citalopram here, so I’ve got a course, a 5-day course of Citalopram in the drawer should I need it. She trusts me to recognise that I’ve got a UTI and I need to take it. I don’t like taking antibiotics because you just wear ‘em out.

But, with this smelly situation, I was getting quite depressed about it and it was going on for months. I took Citalopram, that didn’t kill it either. I went to the doctor and took Flucloxacillin I think it was, not the Citalopram – Ciprofloxacin, that was the normal antibiotic. Fluclox was the second level, that didn’t get rid of it either.

So eventually I went to the Spinal Unit for urodynamics, which got rid of it. Which could have been the intravenous antibiotics they gave as a matter of course, or I don’t know, but it went. And it stayed gone for months, five, six months, and then I got it again and I tried drinking like mad, tried the various antibiotics, didn’t do any good. So this time they said they’d do a cystoscopy. That fixed it.

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Age at interview:

29

Sex:

Female

Background:

Faye was a health care assistant before she had to stop work due to ill health. She is single. Ethnic background/nationality: White British.

What’s it been like having a suprapubic catheter?

It’s been a daily struggle.

A daily struggle?

Yeah.

Can you explain why?

Yeah. I’ve constantly got an infection.

Whereabouts? In the bladder or round about the site?

Yeah, the bladder. Yeah, in my bladder. And I just never know what one day from the next is going to be like, if I’m going to be ill or not.

When you have an infection, how do you feel?

Just, apart from being ill, it just gets me depressed but I’m always feeling ill.

Do you get a temperature?

No, I don’t do temperatures with infections.

Just feel, how do you feel exactly?

Just really ill, I’ve got no energy. And pain.

And then what do you do when you get an infection?

I don’t know. I go to, I’m under the doctors most weeks as he’s always checking for an infection so I’m on antibiotics constantly.

Do you go down to your local GP?

Yeah.

And do they send a specimen off to the laboratory?

Yeah. And it always comes back as it can’t be treated with oral antibiotics. And so that’s when I end up in hospital.

It can’t be treated with other; you’ve tried all the ones.

Oral antibiotics, yes I’ve got to go in for intravenous.

Which antibiotics are you taking all the time?

Nitrofurantoin, is it?

Well we’ll check afterwards. And you say sometimes this doesn’t solve the problem.

No. It just masks the problem.

And you have to go back to hospital?

Yeah.

And have intravenous antibiotics?

Yeah.

And what’s it like having those?

Like I said before, it’s okay. I know the nurses, I’m not scared, I’m not worried about it. I know what’s coming. I just don’t like the feeling ill with it.

Annie said she takes the antibiotic nitrofurantoin every day and rarely gets a UTI. She wondered whether taking it daily could cause damage in the long run, especially to her liver. James, Hayley’s carer felt it was good to avoid antibiotics whenever possible. Hayley’s UTI had become resistant to a certain type of antibiotics.

The medical centre are very good. I just phone the secretary and say “I’m bringing down some samples, can you do a path form for me?” And if I get it down there for twenty past twelve, that’s great. It goes off for testing. And they’ll do the path form and it’ll be waiting for me. If that secretary’s not on, I have to then phone up, ask for somebody to come and do it and now they’re pretty good…..

But you could be doing that every week because there’s always something showing with the catheter in there because you’ve got a foreign body in your bladder. And they’ll say, “Oh mixed contaminants, nothing specific,” and you know we’re thinking, “Hang on, something is going on.” And then a district nurse said to us, “Oh,” she said, “Well each time you have a catheter changed, just do a three days course of trimeth”, trimethoprim…

So we done that and then when we was sent, ah that was it she also gave us some dipsticks, and so we could test the urine ourselves for things like that. And then stuff would go off for testing, come back and it would be responsive to various antibiotics. And the district nurse really made a bit of a mistake because she [Hayley, who he cares for] was taking so much trimeth, she became trimeth resistant.

And so now Hayley’s really careful over antibiotics. She doesn’t take them at the drop of a hat; she only takes them when she needs them.

For most people taking an antibiotic is usually enough to get rid of an infection. Jennifer, though, has to have her catheter changed every 3 weeks because she keeps getting infections.

Jennifer is a secretary. She is single. Nationality/Ethnic background: White British.

Why did they have to change it [catheter] every three weeks? Because it gets blocked?

I have it every three weeks because I have recurrent infection, and it’s a recurrent proteus infection, and with proteus infection you get stone formation.

And I have stones that like almost cemented the suprapubic catheter into my bladder. And the stones form round the neck, round like the neck of the catheter, where the eyelets are.

And the balloon is, which when you’ve deflated the balloon and you’re pulling it out, it won’t, it takes a lot of tugging. And the more stones that form, the more trauma it’s causing because every time you deflate the balloon and pull it out, the stones won’t come out with the catheter down the tract.

The stones, when you’re pulling, when it’s being pulled, it has to separate. The stones have to come away from the catheter for it to allow it to come down the tract. So if I go more than three weeks, ‘cos it takes a lot of pulling to come out.

The stones would be harder?

‘Cos the stones are hard, and the stones have to separate off.

Why are the stones forming more now?

Because I’ve got a proteus infection.

Oh the infection.

Most infections, you know you do get recurrent infections with a suprapubic catheter. I’ve a brilliant GP who, we have a rule that if we send off a urine sample, if it shows hardly any white cells, which are like infection, if it shows red cells which are blood we totally ignore that ‘cos you’re always going to get blood with a suprapubic catheter because of the trauma.

If it grows a bug and the white counts very low, we don’t treat it unless I’m unwell ‘cos the chances are that’s just a bug that’s living in your catheter. If the white cell count is high and it’s growing a bug, we treat it.

……I can’t get rid of the infection. I don’t know why. I’m under the hospital, the local hospital to find out why I can’t get rid of my proteus infection.

How long have you had it?

I’ve had my proteus infection since November last year.

Oh my goodness.

So it flares up every now and then. You can tell once it’s better because the changes are easier.

Some people recommended drinking lots of fluids to try and prevent UTIs, or drinking more than usual when a person had an infection. Vicky said she usually got infections when she was drinking less.

Vicky is single and lives with a full-time carer. She is a trustee of two charities. Ethnic background/nationality: White British.

If I do go to London for a day, it’s usually an early start and it’s late home, and it just about kills me. I feel like I’m jet lagged by the end of the day in London. But that’s where I found I probably pick up most of my infections because I go and, I don’t know where the disabled toilets are necessarily available, so I tend not to drink much.

I don’t want to have a bulging leg bag and I don’t want to suddenly think, “Oh no it’s full, and I don’t know where to empty it and I’m starting to go dysreflexic.” One of the side effects of having an over full bladder with spinal cord injuries is autonomic dysreflexia, so that can be a problem.

You don’t really want to be sitting in a room full of people, you know, and quite possibly some people you don’t and have to say, “Sorry, I’m going to have to go and empty my leg bag otherwise I’m going to have a stroke.” It’s a bit embarrassing.

I don’t know, I just don’t like any of that sort of attention; I’d much rather it just wasn’t there. So if I don’t drink then I know I won’t get a full leg bag and I know I don’t have to struggle to find a toilet. I don’t have to worry about my leg bag being noticeable to other people and I don’t need to consider it at all. It’s silly because I end up with infections as a result but it’s more than just a straightforward health consideration sometimes.

Different people recommended different things to try and help prevent infections, including garlic tablets, probiotic drinks, pearl barley, lemon juice and cranberry juice (see ‘Drinking lots of fluids’).

I think the most important thing that patients do is to maintain a high fluid intake. We try and encourage them to drink up to 3 litres of fluid a day. The other interesting point is that they can reduce the risk or encrustation of the catheter if they drink citrates. And that alters the pH at which these crystals come out of solution. And we encourage them to drink a high proportion of citrate with their fluids.

What sort of drinks would those be?

Well thinks like Lemon Barley and Lemonade and those sort of things will help them.

But not orange?

As long as it contains citrate.

Everyday care of the catheter and drainage bag is also important to reduce the risk of infection (see ‘Looking after the catheter and catheter site’). Melanie, who had a spinal cord injury, often wondered why she was getting UTIs. She watched her body carefully, made a few changes and found these helped.

Melanie is a journalist. She is married and has one child. Ethnic background/nationality: White British.

When I started getting infections, I was curious I think because I was maddened, because I wanted to know how the germs were getting in. Whether they were going in urethrally or whether they were going in through the actual site, the hole of the site on my belly. Or whether they were going in the end of the catheter. I suppose by putting the leg bag on, you distance the risk of that happening because you’re not going to get germs. It’s unlikely travelling all the way, right up the leg bag and into the bladder that way. But I’m now fairly certain that the infections are caused urethrally.

Oh.

That’s caused by contamination from my bowel.

Oh.

I sort of pinned that down.

Can you take any steps to reduce the infections?

Well what made me realise, it’s detective work, it’s finding out, like a spinal injury, it’s a case of finding out about your own body. Which is tough because there’s no-one to, there’s no-one that knows it or can give you advice because every spinal injury is so different.

So I sort of could carry and continue, carry out a continual audit of my body and sort of detective work to try, and I changed my bowel routine. I started using an anal irrigation system and that helped to reduce the number of UTI. I was getting a UTI every month. I still am getting a UTI every month. But that’s for another reason.

But about a year and a half ago I changed the bowel routine and, I think because I was less contaminated, I was getting fewer infections. I had quite a breakthrough with that. I also started using a silver catheter, a Bard silver catheter, which I thought would be coloured silver. I was very disappointed. But I thought it would be bling but it’s not. The silver coated one, that seemed to help a bit.

Less common long-term complications include blood infections (sepsis), urethral injury, skin breakdown, bladder stones, and blood in the urine (haematuria). After many years of catheter use, bladder cancer may develop.

Could you talk a little bit about the more serious side effects of having a catheter.

As I’ve explained, having a long term catheter, and by long term we’re talking about people who have a catheter for more than 30 days. They are at risk of infection. Infection meaning bacteria get into the blood stream, we talk about bacteraemia, but if this becomes septic then they talk about septicaemia. And they can become very ill as a result of serious infection developing with the bacteria reaching other parts of the body. And there is occasional mortality as a result of septicaemia. But that is rare.